Sunday, January 3, 2010

Is It Legal? Catholic Mandate for Patient Care.

The article's title, "New Catholic Mandate on Comatose Patients," is misleading. The mandate, Directive #58, applies not just to comatose patients but to all patients who are deemed by the church in need of the introduction of artificial nutrition and hydration (ANH) or who wish to have ANH removed, whether they be victims of a terminal disease, a tragic accident or old age. The Directive qualifies ANH, applied by a surgical procedure, to be "obligatory" care, regardless of the "do not resuscitate," advance directive or living will desires of the patient.

Egelko asks, "A Legal Conflict?" As we've seen with other patients' rights at Catholic hospitals, particularly women's reproductive rights, the church is shielded by a webwork of laws (provider refusals or so-called "conscience clauses") that allow not only individuals but institutions (even those with tax-exempt status, serving diverse communities and 50% funded by the federal government) to deny patient's their rights by either not informing them of common procedures, not referring them for such procedures, or simply not performing those procedures.

The conscience clause enacted by Bush 13 months ago is up in the air as the Obama administration reviews it. Fierce lobbying by (unregistered, unreported) Christian lobbying groups, such as the USCCB, which has a staff of 350 in Washington, are working around the clock to ensure that their health care entities are not regulated by the federal government - and can subsequently shape health care as they see fit. Beyond segmented patients' advocacy groups for elder and terminal rights, gay rights, and women's rights, there are few powerful entities within society that can stand up to the entrenched, well-funded, and influential medical or Christian lobbies.

Religiously-inspired conscience clauses have been challenged unsuccessfully in the courts but only on privacy grounds, not on Establishment, Equal Protection, or separation of church and state grounds. The courts, including the Supreme Court, have famously shied away from engaging "separation of church and state" arguments with regard to health care. The patients' rights movement has struggled for decades against the powerful medical industry and fundamental Christian forces. As patients' rights stand now, medical institutions and the Catholic Church enjoy much more protection and many more rights than the patient.

The solution that Lori Dangberg of Alliance for Catholic Health Care disingenuously offers is that patients who encounter a conflict with the Catholic institution where they are being cared for can be transferred. But anyone who has experienced the wasting and death of a loved one knows that Coombs Lee is right when she states, "[Patients and families are] very vulnerable to the kind of duress and shame that a policy like this would inflict."

We've seen the church use this tactic before with abortion, sterilization and other "shameful" women's services. Over the past 30 years women have been shamed out of hospitals, become accustomed to traveling for the services they need, or required to comply with the dictates of the Church because they lack the resources to go elsewhere. A network of clinics and independent reproductive service centers has risen up to serve those neglected by the Catholic and other discriminating hospital networks.

The end of life is a trying period for both patient and family. Because few Catholic hospitals readily provide patients with informed consent - and because the general population doesn't understand that Catholic hospitals restrict their care services according to doctrine - many patients and families find themselves in a situation where the advance directive is ignored and death is prolonged or futile care is applied when the patient doesn't want it.

It is nearly impossible for patients and their families to be savvy when they are typically encountering the Catholic medical system - or any medical system - for the first time. Doctors and medical institutions operate from a position of authority and vulnerable and distraught patients and families are often cowed into complying with such authority, against their wishes. For many, this experience of death is their first and they go into it without understanding how we die, what medical procedures are standard or necessary, and what a patients' rights are. Going against hospital policy takes tremendous knowledge and effort when in such a traumatic situation.

I'm tickled to see Egelko's article now. I hope it is a sign that the media is beginning to recognize the current discrimination in health care delivery. And I hope that it raises pressure on the church, the state, and the medical industry to better serve citizens.

The nation's Catholic hospitals, including three in the Bay Area, face a new religious mandate in the new year: to provide life-sustaining food, water and medicine to comatose patients who have no hope of recovery

The U.S. Conference of Catholic Bishops issued the directive Nov. 17 to the more than 1,000 church-affiliated hospitals and nursing homes in the United States and to all Catholic doctors and nurses. Invoking a 2004 speech by Pope John Paul II, the bishops said Catholics must provide nutritional assistance to patients with "presumably irreversible conditions ... who can reasonably be expected to live indefinitely if given such care."

A previous directive let Catholic hospitals and doctors decide whether the burdens on the patient outweighed the benefits of prolonging life. The bishops said the new policy was guided by "Catholic teaching against euthanasia" and by John Paul's observation that providing food and water "always represents a natural means of preserving life, not a medical act."

The directive plunges the bishops into another health care controversy, on the heels of their lobbying for tight restrictions on abortion coverage in health legislation pending in Congress.

Catholic hospital officials say the November decree isn't rigid and leaves room for accommodating patients' wishes. But the bishops' language appears to conflict with a hospital's legal duty to follow a patient's instructions to withdraw life support, as expressed in an advance written directive or by a close relative or friend who knows the patient's intentions.

Courts have ordered hospitals to disconnect feeding tubes when an unconscious patient's wishes were clearly established. The best-known case involved Terri Schiavo, the Florida woman who died in 2005 after 15 years in a coma and unsuccessful attempts by her parents and Republicans in Congress to keep her alive.

A legal conflict?

The bishops' order "fails to respect settled law that empowers patients with the right to refuse or direct the withdrawal of life-prolonging care," said Barbara Coombs Lee, president of Compassion & Choices, which advocates for the right of terminally ill patients to make life-or-death decisions.

"It will apply irrespective of your religious faith, your stated wishes in an advance directive, or the instructions of your family."

That's not how the bishops' decree will be carried out, Catholic hospital organizations insist.

The decree itself does not require life-sustaining care that would be "excessively burdensome for the patient" or would cause "significant physical discomfort." If those exemptions don't apply, a hospital will send a patient elsewhere rather than violate his or her expressed wishes, the organizations said.

"If it was unresolvable ... we would transfer them or find some other means to accommodate them," said Lori Dangberg, spokeswoman for the Alliance of Catholic Health Care, which represents California's 55 Catholic hospitals.

The hospitals include St. Francis and St. Mary's in San Francisco and Sequoia Hospital in Redwood City, all owned by the Catholic Healthcare West chain. Dangberg noted, however, that such situations usually arise in nursing homes and other long-term facilities, rather than in acute-care hospitals.

Ethics considerations

The Catholic Health Association of the United States, which represents both hospitals and nursing homes, said a facility's ethics committee would probably meet with the doctor and the patient's representative to "explore the alternatives" whenever a patient's decision to withdraw life support clashed with Catholic doctrine.

"In some instances, this might include the transfer of the patient to another facility," the association said.

That's not an adequate option, even when non-Catholic health facilities are nearby and available, said Lee, of Compassion & Choices.

"These decisions are hard on the family," she said. "They have to muster their will and their courage to do what they know Mom would want or what the advance directive says.

"They're very vulnerable to the kind of duress and shame that a policy like this would inflict."

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About Me

I'm a writer (and hospice volunteer) living in Red Hook, Brooklyn, and writing primarily about the nexus of death and religion for publications like Guernica magazine (where I'm a contributing nonfiction editor), Lapham's Quarterly, Bookforum, The Nation, and Killing the Buddha.

I am a Visiting Scholar at The Center for Religion and Media, NYU, and a contributing editor at The Revealer, the Center's publication (where I was editor until June 2013). I write the monthly column, "The Patient Body."

The Good Death: An Exploration of Dying in America will be published by Beacon Press in January 2016.

You can find my articles at annneumann.com.
I can be reached at otherspoon@yahoo.com, @otherspoon